Singing for the brain..my way

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Sunday at the Coalhouse a micro pub/Real Ale bar.   Open mike night every other Sunday starting at 3pm.  Home by 8.30 or 9pm!

Of course my friend Lynn and I visit this, our local to enjoy the atmosphere, have a drink and listen/join in with the excellent artists singing.

I sound like an advert don’t I, or a drunken mate trying to get you to join us for a jolly good time

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What I am getting at is that singing is good for the brain, and Dementia Choirs are an excellent way to enjoy a pleasure we can all do which is sing.  It stimulates lovely memories of music you have enjoyed as a teen/mum/dad, on holiday, a celebration, or a time in your life you associate with a loved one.   I am not talking war songs or music from the 40’s here, I am talking music from the 60s, 70s, 80s and so on.   As more people are diagnosed with a memory or dementia related illness younger it is important that music is age appropriate.

I am not keen on joining a choir, I don’t have a particularly good voice, not that matters one bit, but I think I don’t like the organised bit of it.

For me I like to hear a live band, or a live singer.   Music in the Coalhouse can range anything from folk, Snow Patrol to Creedance clear water, even a bit of Hendrix.  Now there’s my type of music at times!   To these I sing my head off!  Lynn and I are occasionally give a Tamborine and Maracas and we go for it.

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Lynn took a picture of me and my daughter singing, playing and having fun.  This for me, is my singing for the brain.  Suck it up Dementia singing loud and out of tune!!!

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So don’t stop going to the pub when live music is on, stay for as short a time as you want, choose an ‘open mike’ event, where singers with a guitar, or singer songwriters just get up and sing.   Staying even a short amount of time is invigorating.  If classical music is your thing, then how about finding lunchtime concerts?   I find it difficult to cope with loud noise or too much background noise, but this is something I find immensely enjoyable because in a small place the level of sound is usually pitched correctly and not enough to blow your ears off.  Everybody is singing, you are so engaged that any other background noise simply disappears.

So get your positive pants on and go for it …

Change of site name!

Some of you who read my posts may have notices that I have changed the name of my page.  It used to be ‘Before I Forget’, and I realised that there are so many pages with that name which may be more important than mine so thought of a new name.

My URL is http://www.handbagwarrior.com, the domain which I bought a year or so ago, and I identify with the name handbagwarrior in my passion for helping to educate my local town about living with Dementia. I sometime feel like a warrior trying to support my local community to stop being ashamed of the  diagnosis and to start looking at how people can live well.   So, for me the most natural name for my site is Handbagwarrior: Dementia and me.   It has been a long struggle for me to identify who I am now.  No matter how others see me, it is how I feel about myself that I needed to change.  For a long time I have felt lost as me, when you leave work because of illness you lose your identity initially and when your illness is Dementia it felt like all that I had been disappeared then.

Today I am firmly ensconced in my new community.  I am a handbagwarrior in bringing about change in how dementia is seen within the community, and the provision for younger people and those with early diagnosis.  I work hard networking and trying to change perceptions.  I have set up a peer support group ‘Lets Meet Up, peer support group‘, and am formalising the constitution for the umbrella group ofLets Meet Up’.  So under this umbrella is also Lets meet up Art and Social Group.  Constituting the group will enable us to raise our own funds with the sale of things that the Art Group can produce.  My next challenge is to find a permanent home for the group to meet in every week.  My dream would be to have an empty shop to open up a Community Hub in.  Somewhere that groups such as ours can meet on a regular basis, a place that can house information about all the groups and charities that are available in the area.  Lots of peer support groups look for somewhere to meet, so I don’t think it would be hard to fill the place.  I have already made some noise regarding this and fingers crossed this will happen within the next year.  Of course its not just me doing this, I do have a side-kick, Lynn B.  She is a tireless whirlwind! and we bounce off each other as we attend meetings, appointments and network together to achieve what we need.  We are the working group of Dementia Friendly Seaham so there is a cross over in our endeavours.

So, my dementia is very slow progressing and during this time I have a need to get done as much as I can within my community for other like myself.

So, that is why I have changed the name. 😁

Gill x

 

Dementia is so complex

Lots going on, a year of changes, a year of perplexity.

You can read any amount of literature on Dementia, what it’s like to live with it, how do you know if you have dementia, what are the signs, but there is not one source of absolute certainty showing a list of traits of dementia that everyone living with these brain diseases with have together.  Not one.  Each person experiences something different, each person may have one trait, but not another.  So what is a typical experience of dementia?   It is important to know that there isn’t a typical experience.

Thing is, we need to put symptoms, traits, diagnoses into lists, tick boxed so that we can make sense of whether this person ticks all the boxes to say they have a definitive diagnosis of this type of dementia or that.  We expect the neurologists, psychologists, psychiatrists to know how to make sense of what is happening to someone to say, yes you have X type of dementia.  They do their best with the knowledge that we have about the brain, which is relatively little.

Then who really understands the nature of how the brain works, or fail dramatically, or incrementally in the non academic world?  Sometimes we feel that because we know someone with Dementia we are an expert in ‘knowing’.  Perhaps it is because we know so little that is why we are so afraid of brain illnesses, we simply don’t understand what is going on and how to deal with it.

Remember when Cancer was a word that was spoken in hushed voices, if at all.  Way back then little was know and people died horrible deaths whilst surrounded by families tortured by the process.  Cancer.  There are treatments that cure now, there are treatments that enable someone to continue to live far longer lives.  We are not afraid to say the word or talk about it.  Dying is always hard, but now deaths are easier and can be be pain free.

Dementia.  Brain cells die through disease.  We think we know how but not why it happens, what starts it?  Why some people and not others?   Auntie Lizzie used to wander, but Iris never did.  What was the difference in the two people?   Auntie Lizzie born in the late 1800’s died in the early 60’s and had no real diagnosis..  Iris born in the 1930’s had vascular dementia and so it affected different parts of her brain and different functions.   Auntie Lizzie talked all sorts of nonsense, but Iris lost the ability to speak.  She was unable to tell those around her that she understood what people were saying about her, whereas Auntie Lizzie had little comprehension any more.  Iris was bedridden with the loss of mobility,  Auntie Lizzie used the wander the streets in her nightie.  Jack feeds seagulls and paints the most beautiful pictures, he goes to the pub on a Friday night on his own and meets his mates.  His behaviour can be inappropriate because he is unaware that you shouldn’t say some things out loud, or approach people/children you don’t know and interact if you’ve known them all your life.  His short term memory is non existent, and repeats himself over and over.   He has interesting stories of working down the coal pits, and as a welder on the oil rigs.  He is mid 50’s.  Sally lives with her husband and her two boys.  She is late 40’s.  She doesn’t handle money anymore because she doesn’t understand coins and counting.  She saw some long lost friends across the cafe and catches up with them like anyone would but then looks at the tea pot and the cup not sure what she is supposed to do and struggles with the order of how to pour a cup of tea.   She talks about holidays, politics, social activities happening in the town.  We laugh at how we can never remember each others names.

Then there is the marvellous Wendy Mitchell – Which Me Am I Today (blog) who has written a bookSomebody I Used To Know .   Wendy travels around the country talking about her life and educating how to live well with dementia.   How can she do that if she had dementia, some would say.

When you look at people living with Dementia it is easy to see how nobody appears to be the same – until the final stages of their life.   That’s it, that’s the reality of how people see dementia mostly.  The final stages.  ‘Oh my mother had dementia and it was awful, she never knew any of us, and just sat’.  ‘My father/husband got angry all the time for he had to go into a home, then he died’.  ‘She kept accusing me of stealing from her’.  ‘I lost my wife before she died, she slowly disappeared before my eyes’.

So you think you know what Dementia is because you know/knew/lived with someone who has/had it.   This is one person with one type out of the 150 so types of dementia, showing one or more out of a whole host of symptoms that may not be present in anyone else.  The combinations are endless.  Just as individuals have different personalities, so do dementias.

What I will say though is, becoming a Dementia Friends and Champion is something that all people should do, because even if it doesn’t explain all the dementias it does give an insight into how living with it can be.  Knowledge is the best form of action towards becoming prepared for the future, and inclusive in their own community.

Seven years on and my dementia is….what.  I don’t know.  Any different?  A little.  Progressed much?  not sure, a little.   People are questioning me; are you sure you have Alzheimer’s?   Do I have brain damage which is causing symptoms of dementia?  How does that make me feel?  Confused…totally and utterly confused.   New brain scans to come and then what………….